Monday Message

And Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

 

 

Insert apology here… I know I’m a few days late but I am super keen to be part of DBlog week again ūüôā

This morning I received a notification that I started my blog, 1 Type 1 exactly four years ago today. ¬†My reasons for blogging¬†were very different back then, (and I may have still giggled when I heard people say, “blogging” because it just sounded so weird!) ¬†In these four years my experience with and perspective of the diabetes online community, (DOC) has evolved.

In recent times the Oz Diabetes Online Community  , (OzDOC) has reminded of the value of learning from others. Even as I typed that last sentence I acknowledge how ridiculously rudimentary it sounds.  However, it was only after I was able to participate in chats again that this became apparent.  For over a year I was operating OzDOC by myself.  This meant that I planned the topics, engineered the questions and moderated the chat every week, (and took care of a whole lot of other bizzo in between).  I got so used to sitting in the drivers seat that I forgot why you boarded the tour bus as a passenger.  I was absolutely committed to providing the forum for the OzDOC community to be a hub of diabetes peer support but I forgot that I needed and wanted to be part of that interaction too.  I wanted to share my story and have positive impact on the lives of others with diabetes.

Thankfully there are eight people who are willing and able to help run our weekly chats now.  They are Andy , Ashley , Bruno  , Frank , Glen ,  Jenna , Sophie and Tony .  I owe them a lot.  Their dedication to our community means that we all get to participate; to give and receive diabetes peer support.  This happens in many forms but the one that is most important to me is the sharing of experiences to enhance knowledge, understanding and empathy of life with diabetes.

So I’m here to continue to share my story thought blogging again. ¬†(Insert childish giggle here!)

My thoughts.  My views.  My experiences.  My feelings.

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#DBlogWeek 2014 – Change the World

“Let‚Äôs kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you ‚Äúformally‚ÄĚ advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)”

The issue that has been consistently important to me across the years is emotional health.¬† I continue to volunteer to pay it forward to the programs and people who I believe have helped me maintain exceptional emotional health while living with diabetes throughout my life stages.¬† My current focus is managing and operating the Oz Diabetes Online Community.¬† We chat once a week at the same time, (Tuesday 8:30pm AEST) and at the same place, (via Twitter from @OzDiabetesOC using #OzDOC as our hash tag).¬† The topics vary from week to week but I aim to achieve the same thing each week, and that is a place where people can reduce the burden they feel diabetes can add to their lives.¬† It’s an hour each week when you know people “just get it”… a concept I have summed up in a hash tag, #dlove.¬† I was reminded of this very concept only four days ago when I found time to participate in the weekly Diabetes Social Media Advocates chat after a long period of absence.¬† I remembered just how important it is to my emotional health to feel part of a community built on #dlove.

My husband and I went to a Boy and Bear gig on the weekend.¬† They are at the top of our playlist not only because they are exceptional Australian musicians, but because the lead vocalist and guitarist is a lyrical genius.¬† Dave Hoskings spoke about writing a song for his brother when he learnt of his hardships while away on tour.¬† The song is called, “Back Down the Black” and the following lines illustrate why I do what I do for the diabetes community;

“Oh my legs don’t work and my limbs all hurt
As my body aches to take the weight that’s been thrown down on top of you
Like you would do too”

You can listen to this soul-stirring song here;

You hurt, I help.  I hurt; you help.

I’ve toyed with a fairy tale idea of what life, and the world, would be like if you removed the emotional burden which resulted from living with a chronic condition.¬† Imagine if we just didn’t feel anything associated with our diagnosis, our management requirements, or how our lives were simply different.¬† Imagine if we remained purely objective.¬† No emotion.¬† Just doing what we were able to do to keep soldiering on.¬† No feelings about which chronic condition deserves a cure first.¬† No anger associated with the onset of complications.¬† No fear about our offspring developing diabetes.

But until then, OzDOC will do the trick…

The ABC’s of diabetes & OzDOC

OzDOC LogoLast week I moderated the Oz Diabetes Online Twitter chat, more commonly referred to as the #OzDOC Hour of Power!¬† (A Twitter chat affords Twitter users the opportunity to engage in conversation with each other and usually emerges from a new community that gathers around a particular subject.¬† For us it simply is diabetes.)¬† When it is my turn to moderate¬†I like to have a bit of fun every now and again.¬† I’ve been known to mimic popular game show hosts and keep it entertaining while providing an opportunity for people affected by diabetes to connect online.¬† So this time around we played the ‘ABC’s of Diabetes’.¬†¬†From the OzDOC handle, I tweeted the letters of the alphabet and participants were asked to respond with the first diabetes-related word that came to mind.¬† You can access the full transcript of this chat here.¬† So here is the first response to each letter…

A = Alcohol – keep in mind I am a mother to a T1 teen

B = Basal and bolus (I awarded bonus points  for that one!)

c = D-camps (The tweeter was referring to the Diabetes Camps a lot of us are involved in)

D = Drudgery

E = Empathy

F = Friendship

G = Guidance

H = Hope

I = Insidious

J = Journey

K = Ketone

L = Love as in DLove (which I often hash tag as #dlove)

M = Mother

N = Never-ending

O = Ownership

P = Persistence

Q = Questions

R = Reality

S = Support

Insert bonus tweet here from someone who combined the letters S and T to come up with “Type shaming”.

T = Tests, endless tests

U = Understanding

V = Victory

W = Wisdom

X = X Factor – you’ve all got it

Y = YOU – all of you

Z = Zzzzzzz, there’s never enough of them with D

What I found most comforting was that there was very little ‘medical chat’; most of the words focused on or represented the people, the connections, the feelings… what matter most to those of us that live with diabetes every day.¬† That is why I am active on social media.¬† Not for medical advice, but for diabetes peer support.¬† A giggle here, a virtual hug there… it’s what gets me through battles with the ‘diabetes beast’.¬† Check this website out for an example of how our chat could have gone… but didn’t!

Here are a few other personal highlights from this particular chat;

РOne of our participants, @TetheredExpat was tweeting from the back of a taxi in Guangzhou, China.  Apparently using 3G and VPN can break through any fire wall!

– Cupcakes and¬†coffee¬†were mentioned; the universal Diabetes Online Community foods.¬† Please don’t ask why because I have know idea!

Р@RenzaS and @Sophie_Maxwell felt the need to use the fbomb when we got to the letter F.  The beautiful thing was that no one corrected them or told them off.  I imagine that was because we were all thinking the same thing.  However, as the moderator I did have to put them in the naughty corner for a little bit!

–¬†@shootinstarslou freaks herself out with Dr Google!¬† I labelled that the tweet of the night by far.

– There were several tweets dedicated to regular participants who weren’t there on the night, including #dwingman @ashiekitty and #80smusictragic @STroyCrow

– @CoastCath outdid herself with the speed, wit¬†and tenacity at which she tweeted her responses… some may say that she rehearsed it!

All in all it was a great chat and I strongly encourage anyone connected with diabetes to #lurk or #spy just once.¬† Our Twitter chat happens every Tuesday night at 8:30pm AEDT for one hour.¬† All you need is a Twitter account; you don’t have to be an active user.¬† Who knows what might happen.¬† You might just find yourself some #dlove.

keep-calm-and-join-ozdoc

I haven’t quite finished that hypo yet

I’ve never written a blog at this time of night before, but I have to vent!¬† It’s definitely not the right time to sit down with the laptop and bang out a few ideas because I haven’t quite¬†finished my usual chores for this evening.¬† I haven’t quite finished wiping down the stove top after cooking a messy stir fry for dinner… I haven’t quite picked up all the rice off the floor after said stir fry was devoured by a ravenous two-year-old… I haven’t quite put an exhausted 7-year-old to bed… and I haven’t quite recovered from the first, (of five) hypos¬†that I had this morning somewhere between waking up and getting breakfast into me.¬† And it’s OzDOC night…

I have the worst case of hypo brain right now.¬† I can’t think straight.¬† There’s a dull headache knocking at my forehead.¬† All I want to do is curl up and go to sleep, but since treating this fifth hypo of the day with a mountain of glucose, I’m all jittery and alert.¬† My body has been through the mill and here’s why.

A few months ago I decided to make some changes to my eating habits and lifestyle.  There were a number of signs to suggest that the way I was living, albeit reasonably healthy for the average human being, was not conducive with my individual health.  I have seen vast improvements in recent times;  I am pleased, proud and motivated to continue improving my health.

Among the¬†list of improvements, my average total daily dose of insulin has dropped by about 40% and my HbA1c is on a steady decline.¬† Generally speaking, this is all good, great and wonderful on “paper”, but in real life it really does bite the big one at times.¬† Times like today when I just feel like I can’t get enough glucose on board for my brain to function.

Low Predicted

I’m pretty tough and I can handle feeling like rubbish; it’s amazing what choices you can make about your mindset.¬† What bothers me so much that my heart aches is that I find myself very short of patience with my kids.¬† Both Aspen and Jarrah are exceptional children, complete with manners, hearts of gold and the very best of intentions.¬† It is clear to see that all they want is to earn my love and Paul’s admiration.¬† But when I have a hypo nipping at my heels constantly for over 12 hours I get frustrated at the slightest ‘inconvenience’ and I lose sight of their amazing attributes…. and those ‘inconveniences’ are usually just my beautiful kids being beautiful.

Jarrah was trying to do the right thing and put his mug of unfinished milk back in the fridge, but he misjudged the distance to the shelf and spilt it.  Enter crazy MummaKim violently waving a wad of paper towel.

Aspen was practicing her cheer leading routine in the bathroom in preparation for a State Competition in a few weeks.  I found myself scolding her for doing it in a such a dangerous space with a hard floor.  All she wanted was a good mirror to correct her technique.

I am so very fortunate that my kids are made of the tough stuff.  They are resilient, loving, adorable and supportive of me at my weakest, (or lowest) moments each in their own individual ways.  I can only hope that they will recover as well as I do from my hypos.

I can see clearly now…

A couple of weeks ago I made references to a friend’s blog, Alecia at Surface Fine.¬† To refresh your memories, the quote went something like this,

“Peace does not mean to be in a place where there is no noise, trouble, or hard work. Peace means to be in the midst of all those things and still be calm in your heart.‚Ä̬† Author unknown

It resonated with me because only a few days before that I worked on a Diabetes Camps Victoria  (DCV) day activity for children living with type 1 diabetes.  We went to Bounce and it was nuts!  Absolutely nuts and completely brilliant!  I had a paradigm shift during the check-in process for the forty-strong crowd of children arriving.  Pumps were being disconnected left, right and centre.  Blood glucose levels were being shouted out across the tables.  Diabetes Nurse Educators were reassuring the parents and guardians that we all knew what we were doing and that their children were in good hands.  And all of this was being staged in a very small space.

Amidst all of this chaos my mind, body and soul went quiet.  Oh so very quiet.  And for a short moment I could hear myself breathing.  I could hear my heart beating steady and strong.  I felt in-balance, alive and satisfied.

Church sign

I realised that this is the stuff that has helped me get to where I am today.  The children in the room were a concentrated petri dish of diabetes peer support.  They had no idea they were offering it.  They had no idea they were receiving it.  But it was happening and it was beautiful.

One of the best thing my parents did just a year after I was diagnosed with type 1 diabetes was send me to the Royal Childrens’ Hospital (RCH) Camp for Children with Diabetes.¬† This was what was offered to patients of the RCH¬†long before DCV¬†ever existed.¬† Nobody was paid to run it.¬† A pediatric endocrinologist visited for half a day wearing board shorts¬†to check our records books while we were down at Anglesea Surf Beach¬†.¬† One Diabetes Nurse Educator stayed with us on site and was in charge of all things medical; from band-aid distribution to hypo management and insulin administration.¬† But one thing was unequivocally the same as it is today; the peer support was the stuff that really mattered.

That is why I have continued to be involved in that sort of stuff ever since.  I was fortunate enough to attend many camps as a child and teenager.  As an adult I moved on to become a volunteer recreation leader, camp coordinator and member of the management committee. I made a few risky career choices to work for a diabetes organisation.  And since having my children I have co-founded the Oz Diabetes Online Community so I can continue to get my fix of the important stuff.

Because that is the stuff that is important to me… and to so many others.

It’s National Diabetes Week, 2013!

And I bet only people affected by diabetes took notice of the blog title…

MediaDuring our weekly Oz Diabetes Online Community Twitter chat last night we discussed National Diabetes Week and diabetes awareness campaigns in general.¬† There was a lot of tension in our “virtual room”, but not the sort that was directed at one another.¬† It was more a general sense of frustration.¬† In our collective humble opinions, diabetes awareness campaigns don’t achieve what we want them to achieve.¬† Some people voiced their concern over too much attention being given to people with pre-diabetes and type 2 diabetes.¬† Others were disheartened when the media simply got things wrong.¬† But one thing was for sure; we were all feeling like we were the only ones paying any attention to the key messages of National Diabetes Week.

If I have been clever enough to attract readers who don’t have diabetes, you can find a summary of the main purpose and activities of National Diabetes Week in Australia, 2013 here.¬† There are some graphic images and messages that may not make a lot of sense to the uninitiated or overseas guest.¬† Either way, Diabetes Australia are making a call to action leading into the up and coming Federal Election.¬† They want a new diabetes strategy.¬† And they want it now.¬† I blogged about it a couple of weeks ago here.

The Juvenile Diabetes Research Foundation probably do a better job at covering the issues of concern to me.¬† But that’s because I have type 1 diabetes.¬† The CEO, Mike Wilson recorded an open letter.¬† I like it.¬† It speaks to me and so many of my friends living with type 1 diabetes.¬† All we ask is for the media to get the facts straight as a form of support for us doing our best to look after our health; day in and day out.¬† And look; the good people at JDRF have made it even easier by putting together a toolkit to help the media get it right!¬† In their latest survey, “Type 1 Diabetes in the Media” JDRF uncovered some key statistics;

93.6% of respondents felt that television, print, and radio media did not correctly distinguish between type 1 diabetes and type 2 diabetes.

83.9% of people list websites of diabetes charities as their most trusted information source

Nearly 68% of respondents said that they visited a diabetes related blog, forum, or online group (e.g. Facebook groups) for information and support.

People are using social media to connect with others living with type 1 diabetes (58.5%), as well as get reputable information straight from the source (63.9%).

Over 90% of respondents felt excited and inspired about positive news stories about people living healthily and happily with type 1 diabetes and research developments.

I have just been interviewed and photographed¬†by our local newspaper, The Geelong Advertiser.¬† Let’s see how they go with representing me, my type 1 diabetes and my community!

Oh! And a very happy National Diabetes Week to you ūüėČ